It’s Sunday, I’m lying in bed, and I woke with the first light creeping in around the edges of my bedroom blind. A moment ago I pulled it up to let the light fill the room. Then I sank back into bed.…

The country’s in the middle of a big chill, thanks to the Beast From The East. This means icy pavements and roads. But these aren’t the only slippy surfaces I’m dealing with at the moment.

My Occupational Therapist’s given me some satin sheets.…

In one week’s time our production of Samuel Beckett’s ‘Not I’ opens at Battersea Arts Centre in London. We’ve been in rehearsals this week and it’s been great getting back into the play. I’ve particularly enjoyed rehearsing with Charmaine, our BSL performer, again.…

I’m lying in bed, my soft duvet enveloping my exhausted body. This weekend the Touretteshero team’s been working flat out on Heroes of the Imagination at Southbank Centre’s Imagine Children’s Festival.

Over the last two days over 2000 children and their families have transformed themselves into superheroes with the help of our incredible band of artists and playworkers.…

I had a visit last week from my occupational therapist (OT) whose job is to make sure I have everything I need to be as safe and independent at home as I can be.

Over the last year or so I’ve been experiencing chronic pain and fatigue.…

In January 2014 I was having a tough time. I’d recently developed dystonia in my hands, which made it hard for me to use them. I had to learn to do things in new ways, like pulling my trousers up or learning how to open a tampon with my teeth.…

I’m not very well today, but acknowledging that, and saying I’m ill, is something I find hard to do.

I’m used to identifying as ‘disabled’ within the context of the Social Model. To me, saying I’m a Disabled Person makes me feel proud and strong.…

Just after Christmas my friend Lottie told me about a product she’d seen at a trade fair – a wearable hot water bottle. She thought it might be useful in helping me to manage the pain I’ve been having in my hips and back, and she was right.…

Yesterday I wrote with pride about my stealthy stair-climbing skills as I crept past my niece’s room while she was asleep.

In the morning Fat Sister brought me a slice of peanut butter on toast. Because she’s my sister she always makes it with exactly the right amount of peanut butter.…

Because lots of my support workers are still away after the holidays I’ve had a few more gaps in my support than normal. Fat Sister and King Russell have stepped in to help, and last night I went to stay with them.…